August 10, 2014

The unrecovered

I have had a lot of reaction in the past few days to that New York Times Magazine article concerning “The Kids Who Beat Autism.” Here’s about all I have left.

The parents, the teachers, the therapists and researchers without a clue who are celebrating “recovery” because they have, in their heads, defined autism as a fixed set of permanent inabilities—

-Are not the people doing the work of passing, and are not going to be the ones to find out first-hand just how long it isn’t actually sustainable.

-Are not the people who get told we’re too articulate to be autistic but have to ration our hours of speech per day.

-Are not the developmentally disabled women who suffer a sexual abuse rate of over 90%, no thanks to the compliance training that teaches that allowing others to control our bodies is desirable behavior.

-Are not the kids pulling themselves through school without disability accommodations.

-Are not the kids getting their supports pulled out from under them when they lose a diagnosis.

-Are not the kids getting chided and belittled because their challenges and oddity are now seen as choices of defiance or misbehavior.

-Are not the people being lied to about who they are.

-Are not the people who are going to wake up one day 20 years from now with no idea who they are or how they got there.

-Are not the people who will spend a year and a half having a meltdown with no idea of what’s happening or why.

-Are not the kids being taught that accepting yourself as you really are and as you really work, would be the worst possible thing.

-Or that the “optimal outcome” for you is to spend the rest of your life pretending to be something you’re not in order to uphold the illusions of the people around you.

-Are not the people who are going to have to re-learn where they belong in space and time and how to live there.

-They will not be the people giving their kids a community and a support system years from now. They will not be the ones who know what to do when they start having breakdowns and burnouts.

They will not be the ones supporting their kids in learning self-acceptance when all their passing skills fail because they are actually incompatible with functioning in the long term.

We will.

They will not be the people there to pick up the pieces.

We will.

There is, indeed, hope for the kids featured in this article, for joy and authenticity. This article could’ve come with a spoiler alert; we know the end of this story. We know it many times over.

It’s just not that these kids live out their lives as non-autistic people.

People need to he helped to be the best person they can be with what they are, not with what society thinks they are. Or should be. You can shove a sponge into a rectangular mold, but it will never become a brick.

I love your analogy! Thank-you, I will be using it when I explain to others why I don’t accept the idea that I should force my boys (both diagnosed) to be anything or anyone other than their true authentic selves.

Couldn’t agree more, as someone with autism who works alongside others on the spectrum, I see the fallout from trying to be normal all the time. I’ve seen supposedly succsesful adults throw in the towel and move to the remotest place they could find because they couldn’t pretend anymore. I see perfectly talented individuals melt down because they have made yet another misjudgement about how to integrate with the outside world.

People tell me that I’m too soft on my own autistic kids, but I’d rather that than turn their childhoods into a constant bullying session. A childhood where they are beaten into someone elses mould because their own is considered inferior.

I was a *teenager* when I came to the conclusion that the only way for me to have autonomy over my own life was obviously to get a cabin in the woods by myself, as far from civilization as I could reasonably live. Because other people’s interest in controlling me was so much greater than any apparent interest in me having a life I could actually deal with. It was truly amazing.

(I did not run away to live in the woods; that turned out not to be necessary. I just wish so many kids weren’t *still* getting taught that they don’t deserve to live in the world as themselves.)

Oh my that is perfect I am one of the ones who had the meltdown and left to go the country mainly because of family trying to make me fit in, and now as a mother of a son on the spectrum also, I am told time and again that is am too soft on him. Maybe its because I remember how hard it was for me when no one understood me. I understand him perfectly.
You said what I think everyday
Thank you

THANK YOU! I spent 11 years undiagnosed in the public school system, until I was diagnosed at 16 and spent one year in a special ed class room being treated like a second class citizen who didn’t belong where I was but would never survive in mainstream classrooms. I’ve been out of school for 6 years now and we are STILL fighting the programming. Still fighting the hiding, the passing, the me is not good enough I have to be “normal” so thank you for bringing attention to this it is needed.

It is such a massive mystery to me that “teach all students to identify and nurture their native strengths” is such a radical notion when it comes to autistic and other cognitively disabled kids. I do not understand.

Other kids get taught to be comfortable being themselves, to not think they have to pretend to be something they’re not.

It bugs me that the author introduces the “recovered” as going to uni/successful at school/socially popular etc as if people who aren’t “recovered” can’t be those things.

And the fact that “recovered” autistics have fewer incidents of diagnosed mental illness – maybe that’s because they’re too scared to seek help, or maybe it’s because society at-large is so inhospitable to those who are different that the “unrecovered” are made to feel like shit. Sounds like a reason to change society – not change our kids.

Right–many, many people who are not remotely “recovered” or who have not “beaten” autism, do those things.

When I was in college, I simply didn’t know yet I was on the spectrum, but I was already starting to not be able to do the repression anymore.

I also want to know at what age they surveyed “recovered” autistic people for mental illness diagnosis. Whether it was at, like, 18, or 50…is going to make a difference. It’s like when they survey life outcomes in terms of independence or employment of disabled people at like age 22…that’s *really early* to be able to call that an outcome for anyone.

I fear i have not given my son enough to beable to cope in this world. I teach him that autism is a part of who he is a unique, caring, creative, smart, loving, funny, wonderful person. It is not the only part of him or the sum of him. I teach him to try and speak up for himself and he does so amazingly. But i also try to teach him that not everyone is accepting of not just him, but anyone who seems different. I try to teach him to be who he is, but i worry. I worry that even though he functions so well that i know how hard it can be for him what happens when someone else decides he is cured. He cannot be cured becauseThere is nothing to cure. He just is his wonderful self with his own set of needs and challenges. What do i do when someone says he doesn’t need support anymore? What happens when i am gone and no one is left to help him navigate our world?

Reblogged this on Opposite Ends of the Spectrum and commented:
This is why I fight so hard against “passing” goals for my kids. I’ve read the same story far to many times to count, of the long term damage done to autistic people under the guise of “helping”.

Forwarded this to my son’s “team” at school. They’re pretty on the ball in terms of not pushing him to not be himself. When I asked them to drop eye-contact goals, and rather to “check in” with the teacher and to tell the TEACHER that he is able to listen without eye contact – they DID. And luckily, the teacher was on board too. She thought it was amazing (LOL) how he paid attention so well without looking like it.

He’s in that “passing” till he doesn’t presentation of autism – other kids see the differences more easily than adults many times. Every year brings bullying fears, but if I can keep the adults supportive, that’s a win.

[…] This and especially the comments are fairly representative. If you hang out enough in the autism community, you see a lot of blogs trying to be Emma’s Hope Book, which claims to have over 12,000 followers (probably true, but I don’t know how to verify it). In other words, people want to vent and have everyone come around and agree and maybe have blogger-reader back-and-forths. I don’t think this space is set up that way – at least not yet – because like the NYT, I don’t have comments enabled. For me, the pain is still too raw. I’m not ready to hear from everyone on the internet about Dar. Private emails are enough. Oh, by the way, here’s a post-”Kids Who Beat Autism” round of outrage on Emma’s Hope Book. […]

Now I have another answer to all those years of ‘cursing in the guise of gaslighting’ I endured – as in “no! It is not merely me who has been *transmogrified* – there are others… Others who have ‘bled as slaves’ for the pleasure of those who name themselves as better.”

Question, though: have you – or anyone else here – ever wondered as to why they – those superior beings who demand we become their mirrors – wish to make us into ‘mini-mes’?

I’ve been pounding on that question for a long time. Again, thank you for telling the truth in answering the autist’s BIGGEST question.

I have been told my 4 yr old may be one of those “cured of autism” children (by a world reknown hospital that does tons of autism research). His autism does not define him but it also is not something that is simply “cured”.

It worries me – this consequence of him being “cured”.

My 12 yr old and my hubby are both aspies so if/when they determine he is no longer autistic, it won’t make difference at home. It does worry me about school though.

Reblogged this on Neuroblending and commented:
A must read for anyone that who thoughts that a person can “beat” his/her autism. I’m sorry to burst your bubble, but no thing such as “cure” really exists.

[…] stimming, and (if you are able to eventually look non-autistic enough) being incorrectly considered recovered and then penalized by having needed services removed. Anecdotally—I don’t know of any […]

Passing – irrespective of how completely and how adroitly it is done – does NOT result in inclusion. One is still a pariah; one remains unwelcome; one always has the feeling of ‘walking upon eggshells’; one constantly fears being targeted for ‘social cannibalism’…

The sole consistent benefit of ‘passing’ – which is what supposedly ***recovered*** autists #learn# to do – is that in becoming “scenery” (a backdrop to Normdom’s unceasing social combat) one is invisible to Normies, as a rule – and hence one is *somewhat* less likely to be abused/bullied/harassed.

Passing will not, as a rule, lead to acceptance – even that marginal form known as ‘getting a job’. The reason:

“The blessings of society are reserved for those who’ve *earned* them – by choosing to be (born) Normal – and then choosing to remain Normal, and then Become yet more Normal… and you’ve done NONE of those things.”